Nicole and I started this blog to keep friends and family updated on Ben's fight against leukemia which began on May 8, 2007.
If you want to make a donation to help Ben and other cancer patients, please click the links in the right margin. Thanks to everyone for your support and encouragement.

Thursday, December 3, 2009

Pat Colley, one of Ben's teachers, is running an Olympic-distance triathalon next Spring to raise money for the Leukemia and Lymphoma Society in Ben's honor! Please support Pat by checking out his Team-in-Training page. Link here and in the right margin.

Friday, November 20, 2009

Sorry that I haven't posted in so long. Things are very good. Ben had to stay home from school awhile longer after the last post because he was neutropenic but only for another week. He is back and so thrilled to be there. We just went back to the hospital for a blood check and received wonderful news - his ANC is up over 2000. Woo hoo!! They moved his meds up to 75% from 50%. We don't need to go back for 2 weeks when he will get Vincristine and another blood check. The expectation is that his numbers will stay strong and he will be put back to 100% of medication levels at that time.

On another note, Ben and David's hockey team won the championship. They were so excited. Yay Blue Team!

Wednesday, October 28, 2009

Although the doctors said on Sunday that Ben should be fine to go to school today...with everything that is floating around right now we decided to stay home an extra day to ensure his ANC had a good chance to come back up out of the neutropenic levels.

Even though he stayed home, we decided that since the Book Fair was taking place yesterday and today we would take a little trip over to the school so Ben would have a chance to pick out some fun books while the annex wasn't so crowded. He also had a chance to poke his head in to say hello to his teachers and classmates. Everyone was so excited to see Ben! He brought everyone a fun Halloween themed baseball hat that we received from the Playroom at the Cancer Center and everyone loved them.

Ben will go back to school for a half day tomorrow before we head back over to the hospital to check his numbers. We are hoping for really good news so Ben won't need to miss the fun Halloween carnival and parade at school on Friday and of course the fun night of trick or treating on Saturday!!

Sunday, October 25, 2009

After much speculation that we would need to wait until the official report from the CT scan, one of Ben's oncologists decided today that he was good to go home!!! We were so overjoyed! No words can express the excitement in the room. I think we were packed and ready to go in about 5 minutes.

We still do not know exactly what Ben had...but it was probably one of the thousands of viruses out there that they cannot test for. He still has a bit of a cough but no fever since Friday night. He is not able to go back to school quite yet, but should be able to by Wednesday. More than enough time to fully participate in all the Halloween festivities.

David is back home after spending much time with his Grammy and Poppy. Although we are so lucky he had such a safe and fun place to be during this whole ordeal, we are so happy to have him home. The boys were so cute upon reuniting (this was the longest they have ever been apart - the hospital did not allow visitors under the age of 18 during this horrible flu season). Of course, this was short-lived and they were back to their fighting and teasing and tormenting in no time :)

We also had the return of the puppies this afternoon! We were so happy to see Dakota and excited to see how much Cherokee has grown in the past 10 days. It was a crazy and noisy household by bedtime...just the way we like it! We are so grateful to have things back to normal!

The boys are sleeping soundly with Shaggy snuggling with David and Zorro loving up next to Ben! Yay!

Saturday, October 24, 2009

Well, it is a week later and Ben is still in the hospital but it looks like there is a light at the end of the tunnel.

Ben's numbers continued to fall until his ANC was down to 100 and his fevers continued to spike up to 104.8+ (the little thermometer only goes to 104.8 so it may have been higher). Thankfully by mid-week his white blood count stopped the descent and started to ease its way back up but confusingly his high temperatures remained. Also perplexing, every test the doctors ran came back negative. Not the flu or other viruses they are able to test for, not a bacterial infection and not a fungal infection. Very frustrating! More than one doctor has commented that we may never know exactly what he had - just one of the thousands of viruses out there that there are no tests for. The great news is that after some medicine changes and of course being at the hospital for a week Ben's temperature finally seems to be under control. It has been under 100 without the help of Tylenol or Motrin since Friday night. He had a CT scan this morning and although the initial thoughts are that the images look good - the official report is still not in. We are trying to be patient but this is getting very frustrating!We are crossing our fingers that they will discharge him tomorrow (of course we only have a chance of this if the fevers stay away) but it might be Monday because of the delayed CT scan report.We are truly hoping that everything will be back to normal soon!

Sunday, October 18, 2009

Ben started to feel a little under the weather last Wednesday evening. He stayed home from school but we weren't worried because his symptoms were very mild and he didn't have a temperature...but all that changed Thursday afternoon. His temperature shot up so we went to the Pediatrician just to have them swab his nose to check for the flu and to get a blood sample to check his numbers. We went back home until the results were ready and during that time he started to feel completely better and his temperature went down so they ended up letting us stay home with instructions that we would need to head over to the hospital asap if his temperature came back. Well it did early Friday morning. We spent the day at the Infusion Center with his temperature going up and down. We also found out that he was neutropenic. By the afternoon, the doctors made the decision that he would need to be admitted.

Unfortunately, he is still there. He is feeling much better and his temperature seems to be under control but his white blood count is extremely low - continued to fall during the weekend. Hopefully they will not need to keep him long...but we will see!

Friday, October 9, 2009

Ben received Vincristine yesterday and started on his steroids for the month. All is fine, but he seemed a bit down at the hospital and didn't even want hot chocolate out of the cool new machines at the cancer center! At least by the end of the visit he started to exhibit some of his normal goofiness but the doctors and staff noticed a difference. His numbers were great (white blood count 1.8, hemogoblin 12.1, platelets 245,000 and ANC 1458) so the guess by everyone is that he is probably just tired of all of this stuff and maybe a little over tired. We are going to try to take it easy and go to sleep early...now if only we could get him to sleep in late!!

Wednesday, September 30, 2009

Well, I have been without a computer so that is why there haven't been any posts. Now I will try to recap how Ben has been for the last few weeks.

School started on September 2nd. The boys love their teachers and classmates and all has been going very well. Ben has two teachers, both men, which is a nice change for him. He has loved all his teachers at this school, they really have been awesome, but this year looks like it is going to be especially good for him.

Ben had Vincristine on the 10th and all went fine. He felt a little more yucky than normal after and unfortunately his days on steroids were really hard on him (and all of us) but he made it through!

The boys started up their new hockey season. We are trying a new ice rink for a variety of reasons and because of this both Ben and David are on the same team together with their best friend. They are having so much fun and having a great season so we are really proud of them.

We had a scare last week when Scott was terribly sick and hospitalized with a bacterial infection and some other issues. Thankfully, all is better now and we were so lucky that Ben didn't get it. Ben had a good time going through the menus with Scott and recommending all the good items - Ben said he was a little jealous that Scott got to eat the hospital food because that is one of his favorite things about being in the hospital. He just loves that food!

Saturday, August 15, 2009

The boys had a tough time this morning. David was recovering from a scooter accident that left him banged up and with two loose teeth (thankfully they are baby teeth!) and Ben from his spinal tap. Ben's back hurt much more this morning than it did yesterday - maybe a full day of hockey after a spinal wasn't the best idea! Despite their aches and pains they both decided to play in their hockey games to wrap up the end of their great week at the Kings hockey camp. They both played so well and we are so proud of them.

At the end of the game awards were presented to a few of the players and we were so happy that Ben received the "Most Inspirational/Biggest Heart" award. We were so excited and proud! Certainly a well deserved award!!!

Thursday, August 13, 2009

Ben had another spinal tap today. He was feeling very yucky this morning - tummy ache, headache, cough and his legs were sore too (but that was probably from the Kings hockey camp this week giving him such a good workout!). Plus not being able to eat or drink was getting to him by his appointment time.

After being examined by two doctors they decided that it was safe to go forward with the spinal. Ben was his usual goofy self and entertained all in the room while he was sedated. I was told he was was very talkative and funny during the actual procedure. Thankfully, it didn't take very long for him to come out of it today so we were home in time for David to be delivered home from camp by a wonderful friend.

Ben's back is a bit sore and we need to watch his cough and make sure he doesn't get a fever but otherwise all is good. His amazing nurse called with his numbers and they are all good: white blood count 2.2, hemoglobin 12.1, platelets 194,000 and polys 1562.

Friday, August 7, 2009

Ben and David have been in chess camp all week and have been absolutely loving it! They like chess but I was nervous that they wouldn't be overly excited about doing it for the whole week even though it is just 3 hours a day. However, I have been pleasantly surprised at their response every day when I ask "how was camp?" They respond everytime, "It was so awesome!" or something similar that response.

I was a little worried yesterday afternoon because Ben started to feel a bit yucky and didn't want to go ice skating as we had planned to do. Then, at about 1:00 a.m. he woke up with a terrible cough. Fortunately, he woke up feeling great and when I asked him how he was doing he said, "Mommy, I'm fine. I can beat leukemia so I think I can beat that little thing!" He is so awesome!

Thursday, July 16, 2009

We went in for Vincristine and a blood check today. All is great! I am kind of glad that we didn't know that Ben's numbers were quite low last week (Poly at 633 and white blood count at 1.5) but the good news is that they are now terrific. White blood count 3.6, Poly 2459, Hemoglobin 12.5 and Platelets are 214,000. We feel good that we took so many precautions with the boys like having them sleep in separate rooms.

Ben still needs to finish out the Tamiflu but David is past the contagious phase of the flu so we can relax. Now we just need to prepare ourselves for the lovely steroid part of the month which started today. Hopefully they won't be too tough on him this month.

Only 2 more weeks until Ben's birthday. I can't believe he is going to be 9!

Friday, July 10, 2009

David has been fighting with a stuffy/runny nose for weeks now without any other symptoms but a couple of days ago he started with a low fever. After a visit to the pediatrician yesterday they let us know that he has the flu. Thankfully, Ben does not have it but the whole family has been put on Tamiflu to make sure that we aren't spreading anything to Ben. We are also using lots of Lysol, hand sanitizer and masks when needed!

We went over to the hospital today. Ben had his blood drawn but the nurse who normally takes care of him was out today so I didn't get a call with his numbers. I was told I would be called if there was a problem so...no news is good news!

Tuesday, July 7, 2009

I guess I haven't had much to report. The boys did really well at Danielle's wedding. They looked absolutely adorable and performed their job perfectly. Unfortunately, Ben was having a tough time during the reception and David being a party animal didn't help matters in his mind. It was just unfortunate that Ben was on steroids.

Both boys have been fighting with small colds and we have had some scares with Ben's temperature, but thankfully it never went over the 100.4 mark so no extra trips to the hospital. Ben's numbers were slowly on the rise but not quite to where we want them to be. We are going in again on Thursday for another bloodcheck and hopefully everything will be back to normal.

The boys had last week and this week off of camp but they will be starting a sports camp on Monday which they are both really looking forward to!

Thursday, June 18, 2009

Ben's numbers from Sunday were good (ANC 1302, white blood count 3.1, hemoglobin 14.1, platelets 209,000) so they put him back on his medications at a 50% level.

We went back in today for another bloodcheck and chemo (Vincristine). Ben did great as usual and his numbers were good (ANC 1187, white blood count 3.4, hemoglobin 13.3, platelets 314,000). They brought his medications up to the 75% level and we will go back in a week to check his numbers again. He started on his steroids today so we are really hoping that it won't be so tough on him this month.

We have a rehearsal tomorrow to get ready for the big day on Saturday (my cousin Danielle's wedding and Ben and David are ringbearers). We will post pictures of the boys in their tuxedos - they are going to be so cute!

Sunday, June 14, 2009

We have had a jam packed week. The boys finished school just over a week ago and we quickly said our goodbyes at the school before racing to the airport to catch our flight to New York. Ben started coughing like crazy on the plane - it was practically nonstop, but thankfully he otherwise felt fine. We had a great time in NY visiting the Statue of Liberty, Empire State Building, and of course we couldn't miss the big toy stores (Toys R Us and FAO Schwarz) and the all important NHL store for the biggest kid in our group ;)The highlights were visiting with family and a wonderful friend from college and her family.

Then we were off to New Jersey on Monday to spend time with Scott's Dad and visit with many other relatives. Unfortunately, Ben's cough stayed horrible so we needed to get him a blood check and chest x-ray. Thankfully, the chest x-ray was clear so pneumonia was ruled out. However, we discovered his numbers had sunk down. Too close to neutropenic for our comfort...especially when so far away from home! We made sure Ben wasn't exposed to anyone sick and bought a bunch of extra Purell! Ben's doctor put him on antibiotics and he was taken off the Mercaptapurine and Methotrexate until his numbers get better.

On Wednesday we headed to Philly. The boys experienced fancy Japanese food at Morimoto (anyone who watches Iron Chef will know about this chef!) and to the Ben and David's surprise...they liked the food! Here again we spent time with family and did as much sight seeing as we could - but trying like crazy to stay away from crowds that were too large. Thankfully, all of the cousins, aunts and uncles were healthy so we were able to spend a lot of time with them which was wonderful!

After some more sight seeing on Friday, we headed to the airport to come back home. Unfortunately, David started to feel yucky and on the ride to the aiport he started to vomit. It was not the nicest of flights but thankfully David felt all better by Saturday and Ben did not get sick!

We are off to the Cancer Center this morning for more bloodwork. Ben still has a cough but it is not nearly as bad so hopefully we will get some good news!

Thursday, June 4, 2009

Our good friend Christine Cwiertny and her team is doing a Light the Night event for the Leukemia and Lymphoma Society. Link is in the right margin or below if you want to support her! Thanks Christine! (And everyone please pray for her brother Matt . . .)

Thursday, May 21, 2009

Ben had another spinal tap this morning and all went well. Ben had some very interesting hallucinations and was cracking everyone up with his sense of humor. Ben said that I should share his hallucination, specifically that he thought he saw Mario and Luigi racing their cars on the cupboards in the room and he thought the cupboards were sand. I guess maybe he shouldn't play MarioKart right before a spinal ;) He also thought my hair looked like water - I guess that probably went well with my 4 eyes, 2 noses and 2 mouths!

Ben's wonderful and amazing nurse called with the results of his bloodwork and all was great and right where we want them to be. Unfortunately, I did not have a pen when she called so didn't write them down but it was in the ballpark of white blood count 2.9, hemoglobin 12.9, ANC 1850.

Friday, May 8, 2009

Needless to say, it's a bit of a strange anniversary. On the one hand, we're celebrating the amazing work of Dr. Hurvitz and her team at Cedars. If Nicole or I got what Ben has when we were kids, we wouldn't have survived, yet Ben is in remission and has a very good prognosis. We're also celebrating the silver linings of this whole thing -- we've all been forced to re-evaluate what's important in life, and we've been amazed by the incredible support we've received from friends, family, co-workers, and even total strangers. We've also been blown away by the strength Ben displays every day, not to mention David's ability to deal with the difficulties of having a rock-star brother.

At the same time we want to celebrate, I must say that it's a sad day too. It's not easy thinking about all the things we've gone through -- the fear, the stress, the challenge of helping a young child understand and cope with a deadly illness and the intensive treatment it requires. And we still have a long way to go -- 478 more days of chemo after today. Then we'll be hoping that the cancer doesn't come back for the rest of Ben's life, and also dealing with the long-term effects of chemotherapy.

Once again Nicole and I want to thank all of you for your interest, your support, your prayers and your love. This hasn't been easy, and you've helped us more than you could ever understand.

Friday, April 24, 2009

Ben had his monthly trip to the hospital yesterday and all went well - we won't make any comments about his wacky doctor and nurse ;)I just love how we can be there for things that are really not very pleasant but we still end up laughing hysterically half the time. The people at Cedars are absolutely amazing!!Ben was kind of having an off day yesterday. He was really tired and just kind of blue but all was fine health-wise. He was a good sport as usual and the doctor and nurse really did a great job of lifting his spirits. His numbers were great - white blood count 2.4, hemoglobin 12.6, platelets 319,000 and ANC 1190. Ben's nurse reassured me that this is exactly where we want him to be.He was a bit tired again this morning but all should be fine for his hockey practice tonight and his game this weekend.

Monday, April 20, 2009

Big thanks to Brendan Hahni, who decided to ask guests at his 4th birthday party to donate to the Pediatric Hematology-Oncology Fund at Cedars in Ben's honor. What an amazing thing for him to do, eh? We're very grateful to Brendan and his mom, Veronica. Here's the inside of the party invitation:

Monday, April 13, 2009

Well, the boys went back to school after having two weeks off for Spring Break. Everyone had a tough time getting up on time this morning but they had a fantastic day and were so happy to be back with their friends and teachers.

I just realized I never posted anything last week. After we returned from Hawaii Ben ended up getting sick and we had some worry about temperatures, but thankfully everything passed without any problems.

Ben also started on his new hockey team this past weekend - he is now on the Gold Team. They had a very exciting game on Saturday but unfortunately lost 2-1 when the other team literally scored a goal in the last second of the game. Ben was disappointed but so happy that Danielle and Alex came to watch the game and went out after for a fun dinner and lively air hockey competitions!

Sunday, April 5, 2009

We just returned from a wonderful week in Hawaii. We all had an amazing time. We spent our days relaxing, building sandcastles and swimming in the ocean. The trip was even more fun because we went with our good friends so we had nine of us all hanging out together. We were quite a group! The boys, including Scott, learned how to surf. The instructors said Ben was the most talented 8-year old they have ever taught. He was truly amazing out there. I guess he is a surfer dude at heart :)Scott also chartered a boat and took Ben, as well as Ben's best friend and his Dad, out fishing. They caught many fish and even brought one back to have as sashimi for lunch. Oh, and I can't forget to mention that Ben and Scott swam with dolphins and David and I swam with rays and sharks. What a fantastic week!

Thursday, March 26, 2009

Ben had his blood check and Vincristine today. He was wonderful as usual. His numbers are great - white blood count 2.2, hemoglobin 12, platelets 225,000 and polys 1415. We are so relieved that he didn't catch the strep throat that David has suffered with over the past week.

We did find out something new that explains a lot. During a discussion about what he wants to be when he grows up, Ben said that his first choice is a professional hockey player (second choice is veterinarian). The doctor commented about how that might be tough and that it is astounding that he can play hockey now. She explained that the Vincristine messes with your nerves and makes the patient lose their reflexes. She then tested Ben's reflexes...and he basically has none. I commented that his running is totally different and his general athletic abilities have decreased. The doctor said that this is normal and that many people on Vincristine cannot run or play any sports because their coordination is completely off. Hopefully, his coordination and reflexes will return when treatment is done...but there is no guarantee of this. Some patients do not recover this ability so we will just have to wait and see.

Saturday, March 14, 2009

Ben has a bit of a cold and also a bit of a temperature (99.4). We are really hoping it doesn't creep up (we are safe until it hits 100.4). We don't want to take an unexpected trip to the hospital this weekend. Thankfully, he is in bright spirits and is feeling better than he did this morning so we are optimistic that all will be fine. We will keep you posted!

Monday, March 9, 2009

We are so proud of Ben and his team for making it to the championship game this past weekend. They worked together so well and the coach is just absolutely amazing. Unfortunately, they did not win the game, but they played hard and were still happy with their 2nd place medals. I feel so fortunate that Ben was able to have such a great season. To think of how different his life is now compared to a year and a half ago is pretty amazing.

All I can say is Go Ben Go and Go Purple Team Go!!!!

We are off for a couple of weeks and then a new season will be starting up again. We can't wait!

Wednesday, March 4, 2009

First, and most importantly, we all survived another month of steroids and Ben is feeling great!

Second, somehow the boys talked us into getting another pet (although anyone who knows me well knows that it is pretty easy to talk me into getting anything with fur - and honestly I can pretty much guarantee that the boys will talk me into a lizard or snake as soon as Ben is done with treatment and can have one). The new pet is an incredibly cute dwarf hamster and his name is Snuggles. He is a small but fun addition to the family.

Saturday, February 28, 2009

Ben woke up feeling much better this morning. His tummy did not hurt and although his back was sore it was much much better! Ben was absolutely determined to play in his hockey game this afternoon because it is the playoffs. He had a fall near the beginning of the game which took its toll on his back...but the great news is that his team won 4-1!!! They are off to the championship game next weekend. He is very excited!

Friday, February 27, 2009

Ben went to school this morning even though his back was hurting a little bit. He really didn't want to miss the school day. He promised that he would have the teacher call me if he was in pain (plus I called the teacher to give her the head's up). David was MVP in his class today so Scott and I were at the school around lunchtime to take part in the presentation, which was extremely cute, so we also had a chance to check in on Ben at that time. Ben said that he was still in pain but he really wanted to finish out the day. Unfortunately, things went down hill as the day progressed. By the end of the school day Ben's back was really hurting and his tummy was really upset - he just broke down and sobbed when we got home. He decided there was just no way he could handle hockey practice so we watched Prince Caspian (the boys loved it) and they took a nice long bath but Ben was just feeling awful by bed time. You could tell just by looking at his face what a toll the past couple of days has taken on him. We have a couple of different medicines to help with the tummy trouble created by the chemo...but he just broke down when I mentioned them and begged between sobs not to make him take another medicine. He said, "I have taken so many different medicines the past two days and it has been really tough on me. Please don't make me take anything else!"

The poor guy. I think a good night's sleep is going to make a world of difference. I am really hoping and praying that is true not only because this is so tough on him but also because he has a playoff game tomorrow afternoon for his hockey team. If they win they will go to the championship game next weekend so he will be so sad if he is too sick to play.

Thursday, February 26, 2009

Ben was sad this morning because we needed to go into the hospital for his spinal tap but we went and all went great! He was a little more serious than usual at the beginning but then after he got some drugs in him he was a regular chatter box. He had everyone cracking up as usual. Before he was even able to flip over (he needs to spend quite a bit of time on his tummy right after the procedure for the maximum effect of the medicine) his nurse called with the results of his labs and everything was great. White count at 2, hemoglobin at 12.2, platelets at 185,000 and polys at 1234. Oh, and because he has grown his medications have all been increased - at first he did not like the sound of this but I went through the increases and showed him how small they are so he decided it was okay after all.

Ben was feeling great after the procedure so we went for a special lunch with Scott and also had a chance to hang out in Scott's office. Ben was determined that he not miss his guitar lesson this afternoon so after a short rest at home I drove him to school for the class. He has a little bit of difficulty going up and down stairs and his back bothers him in certain positions but he was not going to miss that class! I think after this long day he is going to sleep well tonight!

Wednesday, February 25, 2009

Today is not sad because anything in particular happened and Ben is fine, with the exception of being upset he needs a spinal tap tomorrow, but I am just blue today.

I was looking up an article on leukemia for a friend and started reading some of the information about relapse and long term side effects from all of the drugs needed to get rid of this terrible disease. I have read all these things in the past and know the facts...but it just hit me like a ton of bricks today. I go day to day focusing on the positive - sometimes because I feel I need to for the sake of Ben and David but most of the time because that is how I truly feel - but today was not one of the those days.

I'm angry and sad and just frankly feel like this all sucks. Ben has been through so much and so has David and it is just such a terrible feeling to feel so helpless and at the mercy of a disease. All I want to do is to protect my children and I feel like I can't do that. This is such a horrible feeling. I have a wonderful and amazing child who has to deal with things no child should ever have to deal with and it just breaks my heart.

I know tomorrow I will wake up and we will get ready for the hospital and we will be our normal goofy selves...but tonight I just want to crawl into a corner and cry myself to sleep.

Saturday, February 21, 2009

Ben had a fantastic day yesterday with his 2nd grade class. They went out whale watching and saw a whale as well as seals and dolphins. He was so excited!! He brought a disposable camera so we are going to get the film developed this weekend - hopefully he got some good shots.

We have a busy day today. Hockey class for David in the morning, Ben's hockey game this afternoon and then a great friend is having a birthday party. She has asked that in lieu of presents everyone make a donation to the Cedars Pediatric-Oncology fund in honor of Ben. Such an amazing and wonderful thing! Thank you Tanya!!

Monday, February 16, 2009

We had a bit of a scare last night with Ben having a very upset stomach and vomiting (even with no chemo) but all is great today. Ben woke up this morning feeling great and was excited to go to the Staples Center and skate with the Kings mascot, Bailey, as well as a bunch of other NHL mascots. David had a great time harassing all of the other NHL team mascots (he was nice to Bailey) and Ben had fun getting autographs from them!

Great day!

Back to school tomorrow after a nice 5-day weekend. The boys are happy to see their friends and teachers...but I'm sure won't be motivated to get up and moving first thing in the morning!

Saturday, February 14, 2009

Nicole, David and I all are fighting off what seems like a minor cold. No big deal for a normal family, but if (more likely, when) Ben gets it there is always the risk of him ending up in the hospital. So we're hoping we get through this with no problems.

Tuesday, February 3, 2009

Ben took the last of his steroids for the month last night so we are all relieved. The steroids were particularly rough on him this month, as was the Vincristine, so hopefully he will feel 100% again soon. Of course, it didn't help that he was also dealing with a bad cough all weekend and he missed another day of school yesterday. But things are on an upswing today so we are happy!!

Friday, January 30, 2009

I picked up Ben early from school yesterday to go get his Vincristine and a blood check. All went well with the chemo and the blood results were great. Hemoglobin at 12.8, Platelets at 217,000 and ANC at 2126. Ben was feeling pretty good so he was able to participate in a school event for the 2nd graders in the evening. The theme was Chinese New Year so the children made a presentation giving the parents information about what they have learned and then performed a fun song. Ben played the xylophone. After the performance we proceded into the classroom to play fun math games. The night was a big success.

Ben started with a small cough last night that we didn't worry about too much as it wasn't worse this morning before school. However, later in the morning I received a phone call that I should go to the school to pick him up because he wasn't feeling well. Not only had his cough gotten worse but he was also having major tummy trouble - most likely from the Vincristine yesterday. We are laying low today hoping that he will be able to do all the fun things planned for the weekend like go to a birthday party and play in his hockey game.

Tuesday, January 20, 2009

Okay, so this is not related to Ben's health...but David lost his first tooth last night!! David has been waiting for this for months and months and at some points has even asked Ben to punch him in the mouth just so he could lose one. But it finally happened (and thankfully it was naturally with no need of a punch)!! He was very excited to get his dollar and a Magic School Bus book about a missing tooth this morning. Yay!

Friday, January 16, 2009

We started a "Cause" page on Facebook that allows you to donate money to the Cedars-Sinai Pediatric Hematology-Oncology Fund. If you're on Facebook, please join the cause and invite your friends! There is a link at the right margin.

Saturday, January 10, 2009

Ben had a bit of a tough week. The boys started back at school. They were happy to be back but Ben was very tired and cranky. We kept things very low key but he still had a tough time. He started getting a cough last night which sounded absolutely terrible this morning. But after some honey and a lot of rest he was feeling well by the afternoon.

David started his hockey class this morning and had a great time. After resting all day and with a lot of begging and pleading by Ben we decided he was well enough to play hockey this afternoon. He was playing against his best friend so he REALLY wanted to be there. It turned out great and Ben's team won 5-1. Thankfully Ben still was feeling great after the game and the cough did not return. Scott is playing tonight so we are hoping he will also have a great game.

We received a question about how soon Ben was able to play sports after being diagnosed. Ben did not do much of anything, other than go to the hospital, for the first 9 months. After going into the Maintenance Phase of his treatment he was more active at school in PE and on the playground but still was not energetic enough for a team. By about the 12th or 13th month he was feeling great and by the 15th month he was totally back on the ice. He wasn't 100% in terms of energy and stamina but still feeling well enough to get on a hockey team and do well! I think he lost a bit of skill and speed being off the ice for so long but he is a fighter and he gets better every week.

Saturday, January 3, 2009

I realized I forgot to post an update after Ben's hospital visit earlier this week. All went fine. Unfortunately, there was a little difficulty with Ben's vein and it burst after the Vincristine so they were unable to draw blood from it so he needed to get a finger poke instead. Ben was great as usual and we were very happy to get the news that his numbers are good. White blood 2.1, ANC 1609, Hemoglobin 12.9 and Platelets 225,000.

Ben has been very cranky and tired for the past couple of days but that is probably just from the steroids. He has a hockey game today so he is trying to get motivated for it. We had some great friends come over yesterday evening and we all had so much fun eating and catching up and all the kids had a great time running around like maniacs!

Winter break is coming to an end. The boys are excited to see friends and teachers...but not so excited about homework and needing to go to bed on time. We've had a great couple of weeks but it will be nice to get into a normal routine again. We just need to keep everyone healthy!